Butterfly kisses

Annie was a yeller today for her therapists--she pretty much hollered for all three of them. Not good for your ears, but indicative of her desire to control her environment. (More dynamic behavior!)

I came in to the living room this afternoon when she was having a more calm moment, and her little mouth curved up into a smile when I greeted her. Annie doles out these smiles so sparingly, that when she DOES smile, it's a red-letter day. So there I was, so happy that she was smiling at me that I knelt down to give her a kiss. I said, "Annie, can I give you a kiss? I love it when you smile at Mommy." And just then, she pursed her lips and made a kissing noise to me!

That'll keep me going for at least a week.

Jean

Sleeping in Seattle

Annie's blood pressure has been staying relatively low--a definite answer to prayer. (And remember, the lower blood pressure equals no gagging & throwing up!) The downside to her lower blood pressure is that she spends most of the day dozing. The Clonidine patch she wears is also used as a sleep aid. Hooray. I was just thinking yesterday how Annie is just too hyper and needs more sedation.

So Beth & Debbie came today and tried to wake her up. They didn't do too badly--she was marginally cooperative with their therapy. I'm kind of embarrassed at how out of shape she is for just being in the hospital a week and a half. But it has been two weeks since she had any formal therapies. Really, though, the other problem is this Clonidine patch. It's hard to do jumping jacks when you're asleep. The docs tell me she'll adjust to it.

BJ, her speech therapist, was here yesterday too. BJ bribes Annie to "talk" by giving her a sip from her sippy cup if she makes noise. Annie is very motivated by water--so when she hums, she gets water from the sippy cup. Beth, on the other hand, likes Annie to use the syringe rather than the sippy cup, because she can practice grasping the syringe with her right hand. That's one thing that actually got better in the hospital--because the only way we could get Annie to be still enough to get a good blood pressure reading was to offer her a syringe of water to keep her right hand busy. So her right hand grasp is good.

Another thing we noticed today is that when you push the ball to her, there's no lag-time before she pushes it back to you. Used to be you'd have to wait and cajole her into moving her hands to push the ball. Now, as soon as you push the ball to her, she pushes it right back--not with alot of strength, but remember, she's asleep on that patch. She even puts her left hand on top of the ball and rests it there. Subtle moves in the right direction.

There are glimmers of a non-adynamic Annie.

Thanks for every prayer,

Jean

Be still before the LORD and wait patiently for him. Psalm 37:7

Putting the pieces together

I have a hypothesis about Annie's nausea & gaggyness. I know you were wondering. It seems to have largely resolved as her blood pressure has come down. And when her blood pressure starts climbing, she gets gaggy. Ah-ha! Nausea is a symptom of high blood pressure. So there you have it. And, besides the four times a day I check her blood pressure, (okay, today it was more like 40 times), I will check it when she shows any signs of being nauseated.

She did have an episode of higher blood pressure readings today, so I called the on call renal doc & they gave the go ahead for giving Annie the emergency medicine. It took effect within an hour, and here this evening, her blood pressure is still within reasonable limits.

Changing the subject--(a little)--I was thinking while we were in the hospital, watching my nurse friends do their marathon 12-hour shifts, that taking care of Annie and her health issues is not unlike what any healthcare worker does every day. Now, of course, my pay is somewhat lower than that of an RN, but the nuts and bolts of it is not an unreasonable way of life for a human being. Doctors and nurses do this all the time. And, frankly, with Bill and the kids around doing things for Annie, I might even get more time off. Okay, not really. And, I know we're not the first family living with complicated health needs. Like I've said before, there's thousands of families who are regulars down at Children's dealing with similarly consuming health problems. And I imagine some of you reading this can totally relate too. Just a reminder to all of us to thank God for good health when we have it. And don't despair if you feel like your whole life is managing your medicines.

However, there is something to be said for broadening your horizons, looking up once in awhile, and not becoming too tunnel-visioned with all this medical stuff. So I garden. And sometimes Annie comes out and "helps" me. And then there's all the other people who live at my house who help me remain somewhat in tune with the world around us.

But while I'm rambling, let me ask you to pray for her "adynamia," or lack of initiation. Back at the end of April, Annie was beginning to roll around, scoot around, and initiate activity. Then we started a seizure medicine that I believe interrupted her progress in both speech and initiation. We are now in the process of changing that medicine. So please pray that Annie begin to INITIATE activity again, start TALKING again, and not have any seizures while we change medicines. This is a slow process, and will take a couple of months (yes, MONTHS) to complete the change. But I really would appreciate your prayers for her to initiate more.

Thanks for listening.

Jean

PS. One more thing--Annie sat up yesterday, looked at me and smiled a great big smile. And she smiled when we put her in bed last night. Those little signs of her personality really keep me going.


Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

We're Home!

The MRI today showed nothing abnormal in her kidney function, so the docs are leaning toward thinking the hypertension was caused by her brain injury. The medicine they started a few days ago seems to be working very well, so they discharged Annie this afternoon, and after spending way too much time on the 405, we got home, popped her in the bathtub, and tucked her in bed. Thank you Trisha, Pam, Linda, Rebecca B., Kathy D., Rebecca M., Vickie, Sue P., Gretchen, Marilyn, Jeff, Dan, Lorraine, Grandmommy, Poppie, Rebecca O., Pauline, Sue & Rick and all my wonderful nurse friends, (you know who you are), for all your visits, phone calls, help & support.

Thank you, too, anonymous prayer warriors, SO MUCH for praying us through this last week in the hospital. Children's is a great place to visit, but not somewhere we want to live!

Jean (and Bill and Annie)


Give thanks to the LORD, for he is good;
his love endures forever. Psalm 118:29

More testing...

Good news today--Annie's blood pressure has been within reasonable limits since last night! And although the docs feel a lot better about controlling the blood pressure, they are still eliminating possible causes for it. So tomorrow Annie is getting an MRI on her innards to see how the blood flows around her kidneys, and to see if there's anything obvious that may be the smoking gun.

We'll be at Children's at least through tomorrow afternoon. If Annie does handstands out the MRI recovery room door, we'll be home tomorrow night. So realistically, we'll probably be going home Friday at the earliest. Also, she's been having little "drop" seizures recently, so we're going to be changing her seizure meds again.

Thank you for your prayers for Annie. She's sleepy on the blood pressure medicine, and so please pray that as we work through resolving these things that the side effects are minimal.

I'm looking over what I just wrote, and thinking--Annie sure has been through alot. Although she isn't communicating verbally, I imagine if she could, she might say how tired she is of all this malarkey. It's not fun being a pin-cushion for tests upon tests upon tests. And it's not fun to feel foggy because of yet another essential medicine. I really can't begin to tell you all the angles you could go to God on her behalf, but I'm confident He'll give each of you a particular burden for her. And I thank you again so much for remembering us in your prayers.

Jean

There is no one like the God of Jeshurun,
Who rides the heavens to help you,
And in His excellency on the clouds.

Deuteronomy 33:26

Riddles, clues, mysteries, and more

First, thank you ALL for patient and persistent and believing prayer.

Jean had a very satisfactory 'care meeting' with nephrology, neurology and endocrinology (and of course, parentalology) today about the Annie Puzzle. These serious minds continue to ponder the symptoms and clues that Annie's complex systems reveal.

Tomorrow there will be an echocardiogram, which will provide another mite of knowledge. Tonight there will be adjustment to Annie's meds. The hope and expectations are two: 1) that Annie's blood pressure can be brought within normal range and be stable; and 2) that the various medicine adjustments will bring Annie into a brighter, stronger, calmer place.

May all of our families be blessed and healthy tonight...and may God be praised for His unending love and goodness.

Rebecca

Enigma. noun (plural enigmas)
Something puzzling, mysterious or inexplicable
A riddle, or a difficult problem

Danny, one of Annie's docs, sat down to talk with us this afternoon and said that she's an enigma. And all indications are that they're not going to discharge her from the hospital until they have the cause of her hypertension figured out. So to help them track trends, the nurse put a 24-hour blood pressure cuff on Annie's arm that measures her blood pressure every 20 minutes or so. It's still unclear as to where the problem originates--her brain, her endocrine system, or one of her medications. So, pray that they have clear understanding as they continue to monitor the situation, take more tests, and review the results.

God can do things outside the laws of nature, and I pray that He would for Annie. We feel your prayers too--please keep sending them up.

Jean

He reveals deep and secret things;
He knows what is in the darkness,
And light dwells with Him. Daniel 2:22

Wednesday update

Annie's blood pressure continues to be high...she's an overachiever in this respect. Attempts to reduce it have been occasionally successful but not permanently successful. Yesterday's seizure activity has been calmed, so that's a good thing. Endocrine tests continue, but there are no actionable results yet.

The hospital walls are the same color as before.

Exodus 17:11-13 And so it was, when Moses held up his hand, that Israel prevailed; and when he let down his hand, Amalek prevailed. But Moses' hands became heavy; so they took a stone and put it under him, and he sat on it. And Aaron and Hur supported his hands, one on one side, and the other on the other side; and his hands were steady until the going down of the sun. So Joshua defeated Amalek and his people with the edge of the sword.

Prayer warriors are the support under our hands. God bless you all. Rebecca

Annie visits the hospital

Dad and Mom and Annie took a trip to the ER today, because of Annie's high blood pressure. It's been an ongoing issue, but today's conversation with the doctor resulted in this visit. ER's being what they are, the wait was too long. Now that the doctors have seen her, they want to run some tests to try to determine the cause of the hypertension, and then decide on a course of action. Annie will remain there tonight; Bill and Jean will spell each other.

Prayer requests for Annie:
Miraculous healing for Annie. We never stop asking.
Great wisdom, of course, for all the health care personnel who are ministering to Annie.
Easy blood draws when the test is a blood test.
Clear test results that have easy answers...another thing we never stop asking for.
A course of action that works and has NO negative side effects.

Prayer requests for the Sullivan Family:
Rest, peace, strength, confidence for Bill and Jean
Rest, peace, strength, confidence for each Sullivan brother and sister.
Traveling protection for each of the kids while they travel to various places this month.
"home as haven" - that when the family gathers at home, there would be an overarching awareness of the presence of the Holy Spirit - a strong fortress and a place of refuge.
Clear thinking - as life goes on, each person in the family has many responsibilities and daily decisions. May each one be protected from fear and confusion; and may each prosper according to God's individual plan.

Hear me when I call, O God of my righteousness! You have relieved me in my distress; Have mercy on me, and hear my prayer. Psalm 4:1

God bless you all for your prayers! Rebecca

Annie had a good day today, even with her stress-dose 'roid attitude. She has kept everything in her tummy since our fiasco in the ER on Tuesday, and today took her first step by herself while working with OT Beth. She also graduated from the syringe to a sippy cup today. Hooray! It'll take me a few days to get up the nerve to use it more often than the syringe, and as with everything, I'm usually the speedbump to her next step forward.

I was reading in an online article about recovery from brain injuries that some people who don't live with their families actually fare better than those who do, because their mom isn't doing everything for them. Like Beth says, "Sometimes help isn't help." Something else I need to be aware of and pray for--wisdom to know when to let Annie struggle and when to do it for her.

Jean


Your ears shall hear a word behind you, saying,

“ This is the way, walk in it,”
Whenever you turn to the right hand
Or whenever you turn to the left. Isaiah 31:21

Things to praise/pray for:

Praises that she:

Didn't throw up today OR yesterday.
Slept through the night.
Enjoyed her swing today, and balanced on it by herself.
Is grabbing her syringe of water and wrapping all five fingers on her right hand in a tight grip--in just one week of practice!
Is standing with very little balance help and taking steps.

Please keep praying for her to:

1. Recover completely from the nausea illness of this week. I would love her to just FEEL GOOD, instead of looking a little sick all the time.
2. TALK. Say words. Smile, grin, laugh, giggle.
3. Eat. Enjoy food. Want to eat.
4. Walk.
5. Have stronger arms and hands.
6. Think, remember, understand.

Thank you soooooooooo much!!

Jean

Just another day at the Sullivan's

Yesterday my sister Rebecca, Annie, and I went to Annie's pediatrician's office to get a check-up, weight check (41+ lbs.), height check (45 inches), and electrolyte draw (unsuccessful). While we were there, Annie threw up her lunch. We discussed what might be causing the nausea, so the doc recommended a stress-dose of hydrocortisone, as well as some other tweaks to help Annie. Then Bill, Annie, Peter & I drove down to Children's in the evening to get the electrolyte draw, and while we were in the lab's waiting room, she threw up her dinner.

We decided that things seemed to be quickly going from bad to worse, so we walked down to the ER and got an IV for the electrolyte draw, (they were perfectly within normal ranges), an emergency dose of hydrocortisone, and an anti-nausea med. We took her home around midnight, gave her another dose of stress-dose hydrocortisone, a bag of Pedialyte, and all her other meds around 5 AM, and she's still asleep here at 8:45.

I think I'll go out in the garden and eat worms today.

Jean

Fear not, for I am with you;
Be not dismayed, for I am your God.
I will strengthen you,
Yes, I will help you,
I will uphold you with My righteous right hand. Isaiah 41:10

Annie's a little puzzle

We're still fussing with the nausea, throwing up, and gaggyness--going on since last Monday. Today we go into her pediatrician to try to figure it out. Her blood pressure is still high. The endocrine system is so complicated, and really, I think we need some tests (which she'll get today) to get objective evidence as to what might be causing all this.

Meanwhile, she's getting better at walking, and yesterday she did really well in her swing--swinging without much help from me to stabilize her. So, although she's not feeling on top of her game, she continues to make improvements.

Thanks for your prayers, and I'll give you an update soon.

Jean

It's been a rough couple of days. Annie's been nauseated and not feeling well since Monday. I had the (stupid) idea to give her an omega-3 fish oil thing, which I think triggered this nausea episode, which required us to give her more Addison's medicine (hydrocortisone), which I think makes her more nauseated and causes her blood pressure to go up. Please pray that she gets out of this nausea-throwing up cycle, that her medicines settle down again, and that her blood pressure go down.

Gretchen mentioned in her last post that she can only imagine how bone weary I get sometimes. This week has been one of those times. It's interesting, though, that God gave me some encouragement Sunday night that has carried me through this week.

I was driving down the road on my way to pick David up from the gym, when I heard a radio show host talking about how Jesus got up early in the morning to spend time in prayer. Then the host asked, "When do you have a quiet time--early morning, late at night, driving to work?" etc., etc. I thought about how Bill & I read the Bible and pray together (briefly) in the morning, and that I pray (briefly) before my head hits the pillow at night. I began asking God to help me spend more time in concentrated, focused prayer, and since the radio station had some commercial on it, I changed the channel to the classical station and then turned it down low so I could hear myself think. Or pray. Anyway--my ramblings to God were interrupted by the familiar music I heard from the classical station: "...His yoke, is easy, and His burthen is light." Handel's Messiah in July? I turned up the volume: "His yoke, is easy, His yoke, is easy, His yoke, is easy--and His burthen is light."

I got the clear impression that God was telling me to forget the works-based guilt about the quality of my quiet times, and just rest in Him. Then it was kind of hard to see the road after that. When I got home, I looked up the Bible verse that Handel wrote his music to in 1742:

Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls. For My yoke is easy and My burden is light.” Matthew 11:28-30

Jean